New to all this

[JennyL]

I am a 36 year old female. I am new to this site and the good old clusters. I got my diagnosis about 4 months ago. Because I am a woman 2 different ERs Failed to diagnos me. I had to go through Boston mass general to get some answers. So this has been frustrating from the start. I am a vet tech, been one for 13 years at the same practice. These horrible things are causing me to lose time at work. I am having major cognitive disfunction and it's causing me distress. Will I be able to work? I also have 2 children and a husband. It's taking a toll on them as well. I'm depressed,scared and very new to this. Are some of you able to work outside the home. Does anything help for this feeling of uselessness. I feel I failed as a vet tech, mother and wife.

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[CHfather]

Your fears and feelings are not unusual, Jle'.   It's amazing how often people with CH blame themselves for having the conditions, and feel that they have somehow "failed."  To me, people dealing with CH are heroes, not failures.  But most importantly, you are just starting on the path to finding ways to manage your CH, and there are many, many things out there that will help you with that.  Would you tell us what you are doing now for your CH?

 

If you are not doing the "vitamin D3" regimen, that's an excellent place to start:  https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

From what I have observed, the other treatment strategy that has produced the best long-term results in terms of stopping cycles and preventing future ones is "busting," which is the reason this site was created.  Busting is using psychedelic substances, often, with some of those substances, at dosages that have no psychedelic effects.  You can read about busting in the numbered files in the ClusterBuster Files section at this board, and you also should also read this to give you a sense of the many current and hopefully future possibilities: https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/

[JennyL]

I take 2000mg of magnesium, vitamin b complex,vit d, st Johns wort, 100mg of trazadone,imitrex 50mg, Naproxen and I smoke pot. And I'm still learning triggers, I figured out recently cold wind is horrible,we had a couple days of negative winds chills. And I'm still figuring out what to do when they occur. And i feel overwhelmed.

[CHfather]

Mass General didn't give you oxygen???  It's the thing you want most. https://clusterbusters.org/oxygen-information/

The 50 mg Imitrex is pills??? Practically useless.  Injections most effective; nasal spray next.  Naproxen also useless.

You don't have a preventive, unless someone's thinking the trazodone might serve that purpose.  Verapamil is the most commonly prescribed one.

One of the great medical friends of people with CH is a neurologist in Boston.  If you're not getting what you need, he's the man to see.  We'll give you the info if you need it.

Please look at the recommended D3 regimen that I linked you to and consider following that.

I don't know what you're taking that might be contraindicated for CH meds or the alternatives we'll suggest here-- you need a doctor or a reliable pharmacist for that. 

Many people find that quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack can reduce the severity of an attack, or even abort one.  Many people like them very cold.

Melatonin at night helps a lot of people: 9mg to start, and then work up if needed.

There's a list of triggers here.  https://clusterbusters.org/forums/topic/4568-triggers/ Pot is unhelpful for some people.  I haven't heard of cold wind as a trigger before, but why not?  Cold wind is definitely a trigeminal neuralgia trigger.

I guess you can tell -- I don't think you've received very good advice or help so far.  The article here by Goadsby is a good, simple summary of medical CH treatments: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/

 

PS: I'd consider changing you screen name, if it's your email address.  Changing it now will change it on all your previous posts.

[JennyL]

I did get oxygen at MGH, not to go home but as a treatment while I was there and an imitrex injection. So that being said I live about 50 miles south of boston. They set me up with a neurologist appointment about a month after going through the ER. I had high hopes, Boston being one of the best hospitals. He was a young guy, cocky and confident. So he dismissed the diagnosis of ch and told me I had hormonal migraines and my biggest problem was my genes. Ok first of all this is not in my family genes that I know of. He said the reason it's not CH's is because I'm a woman. My hopes went down the drain. I told him right then I wouldn't be seeing him again. I am now being treated locally. I've only seen him once and he started with the supplement approach. That's helped for some of his patients. He's only got about 12 people with CH. I am just worried about side affects of prevention. What is a good one to start with? They have offered me one but I am leary of doctors with good reason. I really like my neuro now and will be going back in a couple weeks. He has also given me some pred packs when I get hit hard. But it takes 3 days to kick in and then I only get 1 or 2 sort of ok days. I also have access to o2 at work. We have a rebreather system but can only kick out 5 tops on our regulator. It's for pets..But I've used it in desperation. It helps for sure. But I want to go to my next appointment armed with info and things to try. I've only had 2 cycles one in august when this all started and now. This time may be a little worse. I started about 2 weeks ago and still going. I got almost 2 full days of relief. But I guess you guys call it shadows? That's been hanging out and causing me fear and anxiety. But I do go on with life like you suggest. You just have to, I'm a very positive person, thank goodness! I find this site very soothing and helpful. Makes me feel more normal.

[Pebblesthecorgi]

It sounds like you have a lot of pieces and now you have to fit them together.  The supplement thing is pretty straight forward.  Just follow the combination Batch has worked out.  I am sure it will evolve but the foundation is solid.  For a person with clusters oxygen works to abort.  Oxygen has to be used in the prescribed manner.  That means a pre treatment hyperventalation, 10-15 LPM flow of 100% O2 using some sort of non rebreather set up and continuing inhalation for 10 minutes after abort.  Using low flow )2, poor breathing technique or stopping too soon will not give you an optimal treatment and may leave you with a false impression of oxygen's usefulness.  Steroids in proper dosage should break a cycle pattern in its tracks.  The problem is keeping the beast at bay.  Steroids need to be sustained at fairly high doses for a while and then tapered.  Using a dose pack doesnt give you enough steroid long enough and tapers too fast.  A dose pack may help once in a while but doesnt have enough horsepower to help manage a bad cycle.  If your doctor refers to the suggestions in "UP-To-Date" (a physician reference) the info there is good and very mainstream.

 

Do your best to stay organized in your treatments so you have a solid idea of what works.  Sometimes when things are bad everything and the kitchen sink gets tried and you end up being confused about what works.  Some very good core treatment options have been described on this site and those folks have put the info together in an understandable way.  Review it, make yourself a plan and keep track.  You will make your own situation much better.  Good luck

[Dallas Denny]

G'mornin jle!

Welcome to the community but sorry you needed to join us!

So, as Chf said, high flow O2 is a clusterheads best friend (lifesaver).....most of us require a min of 15 lpm delivered via a non rebreather mask to abort a hit.....I use welding oxygen and routinely abort hits in 5 to 8 minutes!

Since your current doc already has you on some supplements, look into the vitamin D3 anti Inflammatory regimen.....this regimen requires ALL of the co factors to work but it is very effective for roughly 80% of clusterheads.....most of the co factors can be sourced at wally world but you can save substantially by ordering online from "piping rock"....you can start the regimen immediately but you should have your doc do blood work to determine your D3 level....normal parameters are 30 to 120 ng/ml (Mine was 19.9) but after reaching 80 to 85 ng/ml many folks report complete remission or see a reduction in the frequency and severity of hits!

Also, as Chf shared, we have a longtime member who is a neurologist and professor in Boston.....I've had the pleasure of meeting him several times and he is a tireless advocate for the Clusterhead community!! More than happy to get you hooked up with him if you'd like.

Finally, I know several clusterheads in NY, MA, and NH who have meet n greets on a regular basis....nothing like meeting another person that "gets it" and fully understands what you're dealing with....and, if you can find a way, join us in Chicago in Sept for our annual conference....we'll probably top 200 attendees...we had 185 this past September including folks from India, Scotland, and Norway!

Dallas Denny

[CHfather]

I'm surprised you have a neuro with 12 CH patients.  That's a lot.  2000mg of magnesium seems like a lot, too, but maybe that's based on his experience.

I would say your list of items should be

1. OXYGEN (this is also #2 and #3)

4 and 5. Probably a tie between a preventive and Imitrex that works (preferably injections but maybe nasal spray would work).  Verapamil is the most commonly prescribed preventive. It should be monitored for its effects on your heart and blood pressure. I think it is usually started at fairly low (and therefore fairly ineffective) dosages and raised depending on tolerance.  You might start at 160-240mg/day, but it can take 900-plus mg/day to be effective in cycle.  As Pebbles said, the standard 6mg Imitrex injector is more than anyone with CH needs.  If your doc won't prescribe vials and syringes or 3mg injectors, you can disassemble the 6mg autoinjector and use 2mg per injection, or maybe 3.  We can point you to how to do that if it comes to that.

6. Blood test for your vitamin D level.  This is part of a basic blood panel.  As Denny says, as you get your D levels up and use the whole D3 regimen, it can replace verapamil as your preventive.  If you discuss the D3 regimen with your doctor, he might be troubled by the high amounts of D3 that it involves.  Batch, who observes the D3 regimen closely, has seen no issues with D3 at these levels if it is properly taken as part of the whole regimen and D levels are consistently monitored. 

 

Right now, you are looking to get the basics in place.  Don't ignore that energy shot suggestion.  It can help with clearing shadows, too, and another thing that clears shadows for some people is ginger tea.

[sous139]

You have not failed at all and this is not your fault.

 

Please keep some Energy Drinks with Taurine, handy, and I have found these to be a huge help and they help prevent/ease headaches.

 

The Vitamin D3 Routine is great and also keep a food diary as nitrates (bacon and cold cuts) were triggers for me . O2 is a huge help

 

and please get some.  I learned more on this site in 1 week then the other years that I suffered. Follow the plan and it will get better

[JennyL]

Thanks guys, I feel armed with info. It feels good

[ThatHurtsMyHead]

Jenny,

 

I'm just going to ride the coat tails of the others that posted above.  Ditto.  This community rocks!

 

I especially like Sous139's comment "Follow the plan and it will get better" 

 

CHFather put together a great common trigger list that can be found here:  

     https://clusterbusters.org/forums/topic/4568-triggers/

 

It might be a bit long, but it's worth it's weight in gold as a 10 minute read.  I suspect you'll have some lightbulbs going off as you read through the list.

 

PFW,

J

[urs Brasil]

Jenny, probably one does not like to accept (like myselfe):

Pot is a verry bad trigger, kicking in hours after after a certain level consumed. As a lonterm pothead I had to learn this by the hard way. Every other day I could smoke just a normal joint, more causes a bad cluster.

Also from my experience: THC or CBD are not the cause. I had/have both in almost pure form...

Something else within pot causes cluster.

So far my experience. I had/have to stop my ever since habit.